Lets do a Sh*t People say to Metastatic BC Patients
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I've been getting lately a whole bunch of comments about memory. If I mention anything at all to friends (fortunately my close family knows better) about my chemobrain, even in a joking manner, it's always, "well, it comes from getting older. We all get that. I can never remember where I left my keys." I mean, I'm 48, not 84, and no, it's not the same at all. I would hardly notice it except it seems to be really prevalent lately.
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Hiya Ladies! A family member posted this to my timeline and I thought it perfect. I have half a mind to print copies and hand it out to those who could benefit reading from it aka have not a damn clue! I think you ladies maybe interested in sharing it as well.
http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html
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Sinsin,
Thanks so much for posting this! I read it a while ag and loved it but couldn't find it in order to quote it properly. You've saved me so much stress. Oh how I wish old age wasn't making me so forgetful and achy!!
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Sinsin, I've seen the article before and think it's just great. It's actually something I've learned from and put into action when someone I know is dealing with trauma or illness; it's good advice to follow.
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I don't know what to feel. I'm so angry and hurt and somehow, even though I know I am doing well this strikes fear in my heart.
My sister posted something about having said very special prayers today. I sent her a message and asked what the prayers were about, was everything ok. She responded "Yes! I was thanking God for taking care of "X" issue and also that my sister is feeling strong even with sooooo much cancer!" I appreciate prayers, though my sister and I have different theologies. Is it really necessary to point out to me how bad my cancer is? She does this regularly. Not "praying that you will be well." Or "praying that your cancer doesn't bother you or " thankful that you are feeling well" but thankful that I am doing well even though I have large amounts of this disease inside of me.
I am probably being petty and unthankful for her concern but really?!?! I've been thinking I feel every single lesion since I read her message!
Why do people say such dumb things??
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Vadre,
That would bug me too. Can you just say something directly to her? I have found that my family has been very responsive to my suggestions. They love us and want to help as much as possible. Some times they just don't know how. For example, I told my Mother that I don't want to be treated like an invalid and she has changed her demeanor quite a bit. I don't have a sister but sister relationships always seem more complex.
Hugs, Susan
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Susan,
Thanks so much for the hugs. It makes me calmer to know that people "get it." It helps just to know someone will leave a caring message.
The piece that I left out in my original post that makes this so much more complicated and painful is tha my sister (who is five years younger than I) has Stage IV too. She has mets to her bones and liver. With several large tumors in her liver. While we should be able to turn to each other for compassion and understanding it is as if we are in two different worlds. She has chosen alternative treatments for the most part and seems determined to have my situation be worse than hers and that I be reminded of that.
Of course there is a lifetime of sibling nonsense under all of this but knowing that doesn't help. While we have a large and loving extended family, both of our parents and our brother are gone. It's just us. She has mental health issues that should probably excuse all this. I know all these things in my head. My heart is another thing.
Thanks for caring and not telling me I'm being a Ninny.
Virginia
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It would bother me a lot if someone were saying that to me, Vadre. [And as an aside, my mother dealt with mental illness, too. Sometimes she was sane as could be and other times she was off her rocker. So I know something about dealing with a loved one with those issues]. Please don't feel guilty that your sister's comments bother you. She really shouldn't say or write that. Please talk with her and tell her you look at things differently. Also, realize she may be baiting you. By posting some kind of vague request for prayer, she may have known you'd get in touch with her so she could zing another bc comment your way.
You're definitely in a tough place as it's just the two of you now, even tho you have a larger extended family. But you're her sister, and she needs to cherish the bond as well and respect your wishes, if that's possible for her to do.
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Thank you so much, DivineMrsM,
As I said to Susan, my heart is lightened by the knowledge that some of my BCO sisters understand how painful this is. Sometimes I just need people that understand my situation listen to me so that they might, gently, say "Hold on, is it possible that blah blah blah?" I also need some strong people standing behind me. I know that I need to talk to her, whether or not she is really going to understand. I really, truly do not want to hurt her but every time she makes one of these comments I end up in knots for days! It just hurts me as a sister and leaves my hold on my energetic, positive outlook tentative at best.
I also need to talk to her (I will actually probably write her a letter) because my DH, who usually leaves me to deal with my sister as I feel is best, is not going to be able to hold his tongue very long. Very basically he doesn't like to see me hurt, but more seriously in his mind is that he does not like me having to deal with unnecessary pain and craziness now. He really believes, as do I, that part of managing my cancer, is managing the negativity iin my life! He is close to stepping in as my protector here. I am not afraid to. Let him do that if needed but I would like to avoid things being said that can never be taken back!
Your observation about baiting me is very insightful. We are on a spur of the moment little trip with our DS and nephew. A few days in the sunshine on Kiawah Island in SC. When you said baiting a lightbulb suddenly went off in my head about how often these episodes happen when my DH & I are doing something special alone or with our children. Her relationships with her. Husband and kids aren't what I think she hoped for.
The thing that is saddest for me is that I so wish that I was able to support and be supported by my sister rather than feeling I need to protect myself from her.
Thank you again for listening.
Virginia
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Virginia,
You are a lot of things- thoughtful, caring and intelligent to name a few but a ninny you are not. What your sister said would bother me too. I'm sure the fact that you are on different treatment paths too is not easy. Sister relationships are complex and I love how you phrased it "sibling nonsense." I'm dealing with a lot of that lately with both of my sisters. I should have said something to my closest sister who recently asked me to call our uncle to inquire about something she wanted to know but I didn't think was necessary. When I hesitated she responded with, "oh yea, you have cancer." Even though I know my cancer is scary for her too (partly due to sibling nonsense) it still really bugged me.
Sending you hugs,
Lisa
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Vadre, I don't have a sister (although I do have a few clueless brothers), so I don't know all the emotional baggage that can come with it, but it sounds to me like your sister is so insecure that she feels that she needs to always compare herself to you and come out on top. I wonder if there is a way to gently remind her that you're both on the same side, and that you're not in competition. Of course, who knows how she would take that? But you don't seem to be afraid to tell her. I do think your DH is right in that if something like her comments leave you in knots for days, then it definitely can impact your health. You don't need that in your life.
Unfortunately, sometimes people we love are unable (or unwilling) to meet our expectations, so we need to readjust and accept that they can't give us what we want. It is painful, but I think not as painful as always hoping for a different outcome from them and not getting it, you know?
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Wow! Once again my BCO Sisters leave me overwhelmed with support and caring...not to mention your stunning insight. While none of you have met me, let alone my baby sister, you have given a clear and accurate synopsis of her, our relationship and what I need to give myself permission to do lest our relationship do me more harm than good. You have given me several things to 'sleep on!' I have an almost completed letter on my computer that has been sitting there for a week. It is clearly time to dust it off, finish it up and put it in the mail!
You all have given me some new insights to ponder and, maybe more importantly, you have helped me see that it is time for me to break this cycle! I need to reinforce the boundaries that are important to me. I need to begin being the capable, powerful and loving woman I am instead of the competitive, teenage big sister she wants to be in a relationship with. I need to start with the letter I've written and go from there. And I need to do the laundry! 😉
You are wonderful. One of my favorite movie lines of all time is from Shawshank Redemption: "Get busy living or get busy dying." I had no idea, when I first heard this line, how significant it would be to me. It is also such a powerful thing to know that a group of women, who are faced with what we are faced with, always, always is striving to focus on the living part! You keep me focused more often than I can say.
Thank you
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Vadre, I have three older sisters and all the history and complications to go along with those relationships. I love them and they are, in some ways, the most amazing women I know. On the other hand, I spent most of my 20s breaking free from their stranglehold on my life. I had to learn how to skillfully deal with them and protect myself while maintaining friendships with them. As I grew to respect myself more and require more respect from them, the dynamic of our relationship changed for the better. It's funny, because they didn't even know I was 'on to them' (part of the skill). While you may wish for a different type of relationship with your sister, it is what it is, and perhaps as the serenity prayer says, accept what cannot be changed. I also had to protect myself from my mother's twisted mentality and accept that it was so.
I also work with a group of women (at an elementary school) and for the most part they are great but I know all too well how some like to 'throw out bait' just to see fireworks fly. It's sort of like entertainment for some people.
Best wishes on your letter. Sandwich it all between saying "I love you" and "You mean the world to me". That's something I've learned, too.
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Vadre,
Writing a letter like yours is never easy but there are times when you have make you the most important person in your relationship with your sister and not let her control how you feel.
I have two sisters so have some experience of just how difficult the emotional baggage can get. I get on well with one of my sisters but the other is very selfish and controlling. I have always given in to her just for the sake of peace and often to simply move forward or get things done when she refused to cooperate in an effort to get her own way. Recently my sisters fell out with one another and one sister sent a letter very much like the one you seem to be writing to this difficult sister. Just to let you know that this letter was not received well. It was thoughtfully written and reaffirmed my sister's love for the other but because the other sister did not want to relinquish control of the dynamics of their relationship, she has severed all contact with my other sister and with me, too. She has lashed out at both of us even though I was very careful not to get involved. I think she believes that by withdrawing she will bring us to our "senses" and allow her to continue in some very bad behaviour.
I hope your sister is more mature and doesn't respond in the same way. But you might want to prepare yourself for a childish temper tantrum or similar backlash.
Good luck and hugs, SW
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Dear friends & Sisters,
Thank you for all of your support and concern. A special thanks to those of you who reflected back on your own sister relationships I it is so difficult to admit it yourself that the relationship you have with your sister isnt what you would hope for. It makes me very sad. As many of you have said, I can't expect to change her behavior I can only change how I react. I need to keep reminding myself of that. Especially because our interactions, of late, leave me so upset and agitated. It is too bad that our relationship is at this place, but I need to take care of myself. I work hard to have my life be as full of positive things as I can. It is time to stop the cycle. If she decides that she wants to make some changes as well that would be wonderful. All I can do is tale care of myself and no longer allow this to absorb so much time and energy.
Thanks again Ladies. I don't know what else to say.
Virginia
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A friend told me today that she's "not strong enough to handle my cancer." WTF?? To be fair, she has a lot of personal problems right now, and what I think she couldn't handle was my recurrence after three years NED. She thought it was all behind me, I guess. Still, I can't imagine saying that to someone. And it hurts. Arrrrgh!!!!
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Steelrose,
Good grief! Guess your sadly needy friend believes you're stronger than she is.
Obviously you are, but how very childish of her to say so.
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apparently, people with lung cancer have to listen to the same sh*t as us:
https://bravelets.com/product/lung-cancer-alliance-original?nan_pid=1806558007
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Not so much a "what people say" story, but I think it sort of fits here anyway. I hope that's ok.
I went to a new infusion center today, as I started a clinical trial. They don't have the dreaded "end of chemo" bell there. Oh no. Something so much better. ... a group of nurses sing to the patient having their final treatment, to the tune of "My Boyfriend's Back" (yeah, "You're chemos done and you're gonna get out of here, hey now, hey now..." complete with clapping and a little dance routine). I got to witness the show 3 times during the time I was there today. The first time was was just stunned, the second I was sad, and the third, I just jammed my earbuds in and turned my iPod waaaay up. Sigh. I makes me feel like such a Scrooge or a grump, and I understand that it's a happy occasion for those ending chemo, but really people, can you not do your celebrating at home in private?
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kebob- that's obnoxious and I can completely understand. I feel like a grouch too but I suppose I am a little. I don't go spewing negativity but I certainly think it. Lol!
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kebab - my infusion room does the same thing, but they all gather around the end of chemo patient, clapping and singing: "Hit the road, Jack. And don't you come back no more, no more, no more, no more no more"..... etc. Sorry if I've ruined that song for life now for anyone. In all other respects, I love the nurses in my infusion room. But it makes me very sad whenever they sing that song to someone, knowing that I'll be back next week - same place, same time, same channel, same chair. Over and over and over and over and over.
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My center doesn't (at least I've never heard them) do anything like the bell or the singing. But if they did, I would probably ask the nurses if it would be possible to take the patient to another room to celebrate. I do think that those who are finished with chemo should have something to acknowledge it. Maybe a little gift, or a booklet of "Life After Cancer" or something. The big deal of making a lot of noise just seems insensitive to me. But maybe nobody has told them how hard it is for metsters. I've learned that if we just complain, we probably won't get anywhere, but to complain while at the same time offering some solutions to the problem is usually met with less defensiveness and more acceptance.
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I saw an endodontist today whom I had last seen 23 years ago. He's the kind of guy who takes great stock in his chatty cheeriness overcoming patients' dread. In quickly filling him in on my current tooth issue, I told him I was there because my regular dentist had spotted what looked like a problem on a recent x-ray. When I mentioned that I had metastatic breast cancer and was in treatment, he said breezily, "Oh we all have our bumps in the road." He then went into a rollicking, highly-polished, ten-minute monologue on how well he came through two knee replacements last year, surprising all and sundry with his quick recovery and physical prowess.
He left the exam room to see another patient, so I had plenty of time to stew and consider how I was going to handle this. When he returned, I waited until he delivered the bad news (root canal, big surprise) then looked him in the eye and calmly said, "Listen, I need to tell you something. You should not compare Stage IV breast cancer to 'a bump in the road.' Having metastatic breast cancer is not 'a bump in the road.'" He quickly became solemn, said "No, of course it isn't" and appeared genuinely chastened. While he didn't actually apologize, he did seem sorry, and then began asking questions about my treatment. (His questions proved he didn't know much about metastatic breast cancer and nothing about anti-hormonal treatments, but that's another issue, one I see in with depressing frequency in medical professionals.)
I realize his tongue was probably on automatic pilot, but I think he'll think twice before he is so airily dismissive or uses that term again.
Tina
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Good for you, Tina! Sometimes it's just so hard to know what to say -- especially since we do tend to stew and can get quite emotionally wrapped up in these thoughtless comments. But you handled that one beautifully! Deanna
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Good for you, Tina!! You are so right.. He obviously knew jack about MBC. It's hardly a knee replacement and it's the damn last bump in the road for us, the very last.
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the problem with society and stupid people is they don't think before they speak. I come across a lot of dumb people and most are family members and co workers who simply just don't get it. They don't understand how serious this is. That's because they never had to deal with this disease. This is not something u put a band aid on and wake up in the morning and u are healed. But as far as family members I don't think they mean anything bad they are just in denial and hope and pray I will be ok. I would probably do the same.
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congrats Tina! I am amazed how many docs are unaware of MBC??!
On my week off from X (25th cycle starting tomorrow- guess the build up of SEs) I was booed by mom for waking up late and missing the Eid family breakfast.. Btw this Eid lasts 3 days, so technically I didn't miss the entire celebration. Well mom I am grateful I got to see this Eid after all?!!!
What's wrong with the family members, can't they ever get it???
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Tina, great job handling a clueless medical "professional"! Having time to prepare a response was a real advantage, and I'm always grateful when I have the time to think about a good comeback, too. However, I've also had those times when I've just been flummoxed, and later I hate the thoughts of "I wish I said this...or this...or, even better, THIS!" And certainly I've had those times when I just let the comeback RIP, decorum be damned!
Here's an example:
Last week, during a difficult 1500 mile road trip and visits with my wonderful husband's family members, I was sorely tested by the comments of his hyper-religious, self-righteous, ignorant "half-brother" on several issues, including his views on the Affordable Care Act and access to mammography. During that conversation, he really, truly said, "Women who have no access to mammograms and who are diagnosed when breast cancer is late stage have nothing to worry about as long as they are Christians, because when they die from the disease they will just join Jesus in heaven more quickly." To which I responded, "I hope that kind of thinking brings you consolation if your wife [who has had Stage I breast cancer] ends up dying from the disease or if your daughters end up dying from the disease." Not a perfect response, by a long shot, but it was the best I could do as I struggled not to call him a self-righteous idiot (well, actually, even worse) in front of everyone. I then added, "You are an abomination, and what you have said is an abomination, and I will not remain in your presence one moment longer." And I left the house.
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Brendatrue
What!!! All I can say is " what an a**"!!! Good for you that you walked out of there...
Karin
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Brenda, calling him and his spew "an abomination" was brilliant! To use the religious lexicon was a masterstroke of precision targeting, whether or not you realized it at the time. While "self-righteous idiot" may have bounced off his holier-than-thou hide, "abomination" probably pierced it, at least to some degree.
Let's hope you drew blood, so to speak.
Tina
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